Some of the PREVENT Dementia team had the pleasure of travelling to Chongqing, China in October 2018 to meet collaborators based in the Faculty of Psychology in Southwest University. The visit centred around the official opening of the Sino-Britain Centre for Cognition and Ageing Research. Our collaboration with colleagues in China was first established by Dr Li Su, Alzheimer’s Research UK Senior Research Fellow at the University of Cambridge, who founded and co-directs the Research Centre with Professor Hong Chen (co-director) and Dr Jianmin Zeng (executive director) in 2016.

Our visit started with a one day International Workshop on Cognitive Ageing and Dementia, opened by the Vice Principal of the Southwest University. This was followed by key note presentations to a packed room from Professor Craig Ritchie and Dr Li Su speaking about brain health and prevention projects in Europe and some of the interesting imaging results found to date in the PREVENT Dementia cohort from West London. Our afternoon kicked off with a tour of the campus and an insight into life as a student at Southwest University. Next up on the agenda we had a focused session to learn about the work Dr Zeng and his students have been doing as part of their dementia prevention research programmes. Through his collaboration with Dr Li Su,  Dr Zeng has recruited over 400 undergraduate students to complete a brief set of memory and thinking tasks (including the 4 Mountains Test used in PREVENT Dementia) and 160 of them to undergo the same MRI protocol as we have run in the PREVENT Dementia cohort. All volunteers also provided a genetic sample, information about their lifestyle and diet and family history from parents and grandparents. Currently this data has been collected at a single time point but the team discussed plans to potentially gather follow up data to understand if there are any changes over time in such a young cohort on the memory and thinking tasks and MRI measures. We had some excellent presentations from two of Dr Zeng’s Masters students about their work and plans for future studies.

 

We finished the day discussing plans to continue and broaden future collaborations, building on this exciting first in-person meeting. It was clear that everyone at the meeting had a real passion to forge a strong alliance that can work towards developing dementia prevention research opportunities across the globe. Particularly interesting discussions included how we can adapt some of the tools we use so that they are culturally valid (such as food questionnaires which may need adaptation to include country specific foods) and ensuring assessments are accessible (such as ensuring procedures like an MRI are not a barrier for a country participating). We hope to have more exciting developments to share over the coming months and years, watch this space…!

We were also lucky to be treated to some sightseeing whilst in Chongqing, a real bonus to see some of the city and surroundings and start to build an appreciation of the culture of the area. The Chongqing conurbation is home to over 30 million people- coming from Edinburgh and Cambridge this was a huge number for us to comprehend and importantly demonstrates how China will be affected in huge numbers by dementia.  Something you notice as soon as you drive through Chongqing is that it is a city of mountains- this sparked discussions about how well those who grew up in the area would perform on the four mountains test! We also had the opportunity to try a huge amount of local cuisine, a complete feast at every meal.  It was really interesting to see the variety of fresh vegetables used in each meal we had, I don’t think we ate the same dish twice over the 4 days! We also had the opportunity to visit the Dazu Rock Carvings, which are 800 years old and incredibly well preserved, and learn more about the arrival of Buddhism to China.

Overall a fantastic trip to meet our Chinese colleagues and we hope it proves to be the first of many as we look towards developing global answers to the dementia crisis we are all facing. China as the most populated country and second largest economy in the world after the US, it will surely make a significant footprint and contribution to our epic battle against dementia.

 

 

 

 

 

 

 

The PREVENT Dementia annual conference in London brought together participants, the public and researchers from across the UK and Ireland to share the latest developments within the research programme. A range of fantastic speakers reviewed progress of the study so far, presented new analyses and results beginning to emerge form the project and discussed ambitious new plans for the future vision of PREVENT and its continued growth.

The first speaker of the evening was Dr Dennis Chan from the University of Cambridge. Dr Chan’s research focuses on specific areas of the brain involved in spatial navigation and memory. These are thought to be some of the very earliest brain regions to be affected by Alzheimer’s disease. He is particularly interested in developing new and inventive ways of testing spatial navigation skills and was a key member of the team which developed the ‘Four Mountains Task’ currently being used in PREVENT. In his talk, he discussed recently published data from the PREVENT cohort investigating performance on specific navigation tasks and how this may relate to dementia risk in later life. The slides from Dr Chan’s presentation can be viewed here.

Researchers are always searching for ways to make their assessments more closely resemble ‘real-life’ and Dennis spoke of his group’s recent progress in developing inventive new navigation tasks using virtual reality technology. These tasks will be further tested in a new study which will be offered to some PREVENT participants. The study will help us investigate if tests set in virtual reality could have a key role to play in detecting the earliest problems in navigating the space around us. This in turn could teach us about the activity of crucial brain regions that may show changes early in the Alzheimer’s process.

In the time since the last PREVENT conference, the study has gained an additional research site as Trinity College Dublin opened the door to participation in Ireland. Dublin Principal Investigator Prof Brian Lawlor updated the audience on progress with PREVENT’s newest site. His presentation, titled ‘A Framework of Hope’ (slides available here), spoke of the reasons to take a positive view of the many achievements to date and the future direction of both the PREVENT project and the wider brain health movement.

Brian drew upon powerful personal accounts of lived experience with dementia and how these can serve to fuel hope for future advances in the areas of treatment and research. He highlighted how the power of hope can come from the motivation it evokes to take action and make a difference for future generations. Desire to get involved is certainly in no short supply in Dublin as Brian described how the site had been privileged to receive overwhelming public interest in the short time the study has been running, including being contacted by over 600 willing volunteers within the first 2 days of study recruitment!

The next speaker was the Oxford site PREVENT Principal Investigator Dr Ivan Koychev presenting the topic of ‘The Power of Digital Technology to Detect Preclinical Dementia’ (slides here).

As the power of mobile technology continues to develop at lightning speed, clever applications of these tools could reduce the amount of assessments that need to be carried out within the walls of a research centre. The ability to capture more information from individuals at home could not only drive down the cost of doing research but importantly also improve access and widen opportunities to take part.

Ivan has collected some initial data from a group of PREVENT participants and found that their performance on specific mobile phone-based tasks was comparable to their scores on a more conventional thinking task (COGNITO) which was completed by participants at the research unit. This demonstrates that these mobile phone tasks could be used to produce reliable valid results. In addition these technologies could allow us to collect data which isn’t possible to collect in a research unit setting and in real time. Current research largely relies on participants reporting themselves how they manage in day to day tasks and how much time they spend on these. By tracking these activities more objectively through wearable devices Ivan described how we may be able to harness more accurate measurements of daily living. Whether designed interventions (for example drugs) impact on the level of engagement in these activities could have a crucial role to play in deciding whether future treatments are working.

PREVENT Chief Investigator Prof Craig Ritchie closed the conference with a reflection on study achievements so far and an exciting glimpse of the directions the project is heading in the near future. Craig’s presentation (available here) updated the audience on scientific findings already released from the study as well as the many research questions currently being investigated using PREVENT participant data.

Focus then switched to the ambitions of PREVENT moving forwards. Including plans to attract funding for 5 and 10 year follow up visits as well as exciting new collaborations PREVENT is striking up to advance the project on an international scale. Craig concluded the evening by placing PREVENT within a global context, as one of a collection of key initiatives all pulling together to produce the evidence needed to shift the way we think about, intervene, and ultimately prevent dementia.

As Prof Lawlor emphasised in his talk, the PREVENT Dementia Programme is in a unique position to drive change, fuelled by the extraordinary motivation and dedication of its participants. The study is indebted to everyone who has contributed so much energy to our research so far. As the research grows, its power to initiate change increases and with the amazing momentum the study has now built up we look forward with anticipation to all that the next 12 months bring.

Presentations

Dr Dennis Chan – There and Back Again

Prof Brian Lawlor – A Framework for Hope

Dr Ivan Koychev – The Power of Digital Technology to Detect Preclinical Dementia

Prof Craig Ritchie – PREVENT Dementia Progress, Performance and Plans

 

We are pleased to see the PREVENT Dementia and EPAD projects featured in a recent special issue of the journal Dementia. All articles in this edition themed around patient, participant and public involvement. The paper was led by Sarah Gregory from the University of Edinburgh with contributors from University of Edinburgh, Cambridge Institute of Public Health and Imperial College London as well as research participants in the PREVENT study.

For both the PREVENT Dementia and EPAD studies, participant involvement has been key from the outset and we were delighted to be invited to share our experiences with our academic colleagues. We primarily focused on what we’d learnt from PREVENT Dementia and the participant panel that has been established for a number of years. The participant panel is a group of participants actively involved in the study who meet with PREVENT Dementia researchers twice a year to discuss their experiences and advise on all aspects of the study. We did this by looking at the minutes of meetings from the panel and the steering committee (a group of experts who meet twice yearly to oversee the ongoing management of the study) and seeking feedback from both panel and steering committee members. The areas of the study that particularly benefited from participant involvement were:

 

• Recruitment: by working with the panel, the researchers were able to change the study information sheets to improve interest of those without a family history of dementia. The panel were also great advocates of the study and helped directly recruit many participants through word of mouth

 

• Adding additional smaller studies (‘sub-studies’): the panel have been able to advise which additional studies would, in their view, be of interest and have acceptable levels of time burden. This has allowed researchers to feel confident in adding these additional studies and offering to the wider participant group

 

• Study experience: constant feedback was available from the panel on study experiences meaning any changes needed at the study site could be made. In particular feedback around expectations of lumbar punctures, an optional procedure in PREVENT Dementia which allows the collection of a small amount of cerebrospinal fluid (CSF), led to the development of a video which is now commonly used across the different centres

 

• Supporting the future: as PREVENT Dementia has developed, funding to continue the project has been a key concern. The panel were instrumental in establishing the fundraising work and membership schemes which now support some of the PREVENT Dementia activity

 

The paper finishes by describing how we have taken the success of PREVENT Dementia into the European Prevention of Alzheimer’s Dementia (EPAD) Consortium, with participant panels either already established, as in Scotland, or in the process of being established.

The paper is currently available to the public here 

 

Paper Citation

Gregory, S., Wells, K., Forysth, K., Latto, C., Szyra, H., Saunders, S., Ritchie, C.W. and Milne, R., 2018. Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes. Dementia, 17(8), pp.1045-1054.